well as expected I have progression..but then I havent had a CT scan since Sept last yr and I know I had progression on the PET scan from Oct last yr...so this didnt supprise me..but in Sept I was on arimidex, then in Oct was put onto Aromasin, did it till Feb this yr and then Faslodex for two injections.. have done two cycles of Xeloda how long does it take to kick in?

so now I guess its up to the TM which I get the results next Monday...

Gosh this is never ending...anyone here done Xeloda with navelbine if so how did u go?

Funny how the CT and the PET differ so much...

Oh an now the CT says I do have a lung mets the report states multiple solid nodules with largest nodule in the right upper lobe has increased from 4mm to 6 mm..still small?

also there are multiple hypervascular metastatic deposits  in the left chest wall anterior to the pectoralis major muscle the largest mass id 3cm..most other areas the mets are 1cm..gosh to many to mention..

Did say I also have bone mets in Pelvis knew this but didnt mention the femour etc ? this show up on the PET..

I wonder if If my hormones have changed to neg? sounds like it to me..oh well guess I will know more on monday..

hugs

oz

Always heavy, reading your own report and reflecting on it. As you cogently point out, this was expected based on the skin mets and the tumor markers and past PET, but still, it's awfully hard to hear.

I'm sorry about this, Oz, and wish I was there to share some tea and give you a hug. This beast, it just keeps taking from us, even as good people, Elizabeth Edwards, Lance Armstrong, and Koman's CEO Hala Moddelmog just finished testifying before a special hearing of the Senate Committee on Health, Education, Labor and Pensions on the need for comprehensive legislation to address the nation's cancer crisis.

Now it's on to you and your doctors choosing the next step, and surely your TM's and clinical skin mets response will weight in on your joint decision. Please pardon me, as I ask once again, have you had recent biopsy to verify ER/PR and HER status. I apologize, yet cannot recall, and the fact that repeat biopsies reveal 20% change in HER2 with metastatic disease, seems to allow the repeat question.

I'll be thinking much of you this weekend. Hope the weather is good, and you can enjoy the outside should you wish. Thinking of sun prompts me to remind us to take Vitamin D supplements (4000 IU would be great) as evidence continues to point to benefit generally in the body.

Tender

Ozzie, it's hard to read of progression in one we've all got to know. I know you've been on Faslodex for a short while ? Has your onc mentioned Avastin at all ?

I'm still looking into the Tumeric sup for you on this end, been a bit ill and haven't had a chance to go to the health shop.

I agree with Tender, a biopsy will make things clearer. I am sure you probably can't face it now, but its something to put in the back of your mind.

Mine came back with sky high er receptors 8/8 and here I was thinking I had become triple neg.

Holding you in my thoughts my Southern hemisphere friend.


River

Oz,

Like the previous posters, I'm also sorry to hear about the progression. And yes, it is always difficult to face. The roller coaster ride isn't a lot of fun.

As to ER/PR status - after two years of thinking I was a triple neg, I had a biopsy and it showed I was ER+ (highly). The same tissue was re-examined by a pathologist friend and his report showed only medium ER positivity. Then I had a core biopsy of another spot and it showed an even lower ER+ number. When asked why - I was told that they look at the slide under microscope and sort of eyeball the percentage of ER+ cells in the slide. So, it's not an exact science and seems to depend on which part of the tissue the slide is representative of.

With all that said, I was also told that not all ER+ cancers respond to anti-hormonal therapy. I tried two (femara, faslodex) and had some progression on both.

Best of luck to you. Hope the xeloda kicks in - they usually give it three cycles before changing.

Jeanne

Oz, it is hard figuring out what is new and what is not since you do not have many scans.  Obviously your TM's are telling of disease progress for you but where it was progressing no one knows.  With the skin mets clearing I am really hoping the xeloda is doing something good for you for a change!  Who knows by the time someone does a scan for you again the xeloda can have you NED!  We can always aim high, right?   Sorry to hear soft tissue has now joined the mix, just remember though we are here with you, you'll get through this!

Oz,

Here is an audio clip link to Dr. Ian Smith, medical oncologist professor, UK which talks about the endocrine resistant state, Xeloda success and his view on single vs combo chemo therapy with progression (he favors single, and does talk about the taxanes, docetaxol and paclitaxol).

I thought maybe it would be helpful. Btw, he does mention the toxicity reported with combo Xeloda and Docetaxol and how it is generally reserved for extensive soft tissue mets. You're right.

Link: http://www.breastcancerupdate.com/download-audio/bcu/2007/7/BCU707_Smith/BCU7_2007_Smith_11.mp3

Hope this finds you well,
Tender

Hi Oz - I do not know much about scans and treatments, as I am new to the board, but I am joining all your friends here in prayer. May they find the best combo for you, and may you receive good news soon!

Hi oz,

So, so sorry about the progression.  So frustrating.

Are you considering adding Navelbine to Xeloda?  I didn't even know that it's that common to do a Navelbine+Xeloda combo.  My oncologist put me on Navelbine+Xeloda combo early Feb 08.  Unfortunately for me, my tumors (yes, I have too many to mention in the lungs) grew through that combo.  I only took 3 cycles.  But I am VERY triple negative (5 biopsies confirmed the triple negativity), so your tumor response is probably going to be different from mine.

As far as side effects go, I didn't suffer too much.  There was some cramping-like muscle spasms in the diaphragm area within the first 24 hours.  Maybe some gas and stomach upset.  But everything was tolerable.

Yes, 2 cycles of Xeloda seems minimal, so you may want to give it a little more time.  Hope Xeloda (alone or with Navelbine) gets rid of those tumors.  It's been used for metastatic bc for a long time and it's helped many women.

Best wishes...

Hi Girls...thanks for the replies..yes its a bumma...

Tender the last Biopsy was done in Dec 06...then I was ER and PR + and HER 2 NEG...I also think its time for another biopsy so will ask for this...I have asked before but the Onc I had then said there was no point in it they only do it once!

SO guess I will wait till monday and see what TM markers say...I really dont want to do IV chemo...and Xeloda and Navelbine are both oral...havent done Avastin... dont want it if there is Hair loss...

just dont want to go the NO HAIR again ...its my pet hate...sorry..

hugs

oz

Ozzie, this news is awful. Deep sigh...... I'm sorry girl. I know how you feel about the hair loss .... no reason to apologize for that.

I don't have words of wisdom like the other gals just wanted you to know I was thinking about you.

Hugs girl,

Traci

oz,

Avastin does NOT cause hair loss, but it is an IV.  Personally, I'm a fan of Avastin.  I believe it's effective for all kinds of MBC, and has very tolerable side effects.

Hope this helps.

New to the site and boards. Going thru testing now myself and I agree biopsy is the best result than these scans. In my prayers and {{{{HUGS}}}}

Ozzie,

I am so sorry! Cancer just plain sucks. I do hope you are able to convince your doctors to do that biopsy. I haven't done any IV chemo, but have read and been told that AVASTIN is one of the easier chemos--mainly, I think, because its goal is to starve the tumors of a blood supply rather than other (cytotoxic) chemos that kill rapidly dividing cells. It seems as though the worst thing I've read/heard about AVASTIN is problems with nosebleeds. AlaskaDeb has been on it a while. I know she has a thread here somewhere about it.  I'm sure losing your hair sucks bigtime, but hope that won't keep you from taking a treatment if it's what will work best for you. It just plain rots that the drugs we have to take are so hard on us.

I wish I could reach across the miles and give you a great big hug! Progression stinks! You have been, and will continue to be in my thoughts and prayers.

((((HUGS)))

Diane 

OZ,

Avastin did nothing to my hair, even when combined with Xeloda and Faslodex. You rock girl, keep on keepin' on. I'm sorry you had progression...but these three drugs are really good ones. Hugs to you tonight...

Thanks for the support girls...you are all my support girls...

AliceJean thanks for that info re the no hair loss....dont know where I saw that u lost hair with it ...guess I was looking up to many chemo drugs....also another thing I have found its not supported here in Aust so I would have to pay big time for it...like $4000 a mth,as its not approved for BC only colon Ca...

well I guess  I have to wait till Monday... just praying that TM are steady or down..

Please  say a pray for me thanks...

 still wondering why the CT scan didnt mention the BC that the PET scan said I had in the right breast lymph nodes have they gone ???

love u all

hugs

oz

Oh by the way I can do with all the hugs and prayers that u can send my way....the more the betta...

hugs to u all..

oz

Don't know what time of day it is now in Australia, Oz.

But hugs and prayers coming your way today (Mother's Day here in the US).


O/T, my daughter will be traveling to Australia with school next month for seventeen days! So excited for her. Too long a trip for me to escort, but I'll be thinking of you both.

With much care,
Tender

Hi Oz, you are in my prayers, honey. Lots of warm hugs!